Gardening blogger Sheila Averbuch of the Stopwatch Gardener (www.stopwatchgardener.com), based just outside Edinburgh, is holding a special ‘Rare Plants for Rare Disease Research’ event in her own garden on May 24th between 10am and 1pm, offering plants from some of Britain’s favourite nurseries.
Following the success of the first Rare Plants for Rare Disease Research fundraiser in 2012, the event on 24 May will again dedicate all profits to the Advocacy for Neuroacanthocytosis Patients (www.naadvocacy.org). The Advocacy is a registered charity which sponsors research into this extremely rare neurological disorder, which may one day shed light on other neuro-degenerative diseases like Parkinson’s, Huntington’s and Alzheimer’s.

As Sheila explains,

“Like other families affected by rare disease, my friends Ginger and Glenn Irvine are helping fund their own research into the ultra-rare disease that affects their daughter Alex. Plant enthusiasts are often keen collectors of rarities, and I thought a sale of unusual plants would be a good way to raise funds and awareness. Coming at the end of Chelsea week, the sale is a great way to celebrate the season and support an important cause.”

In the run-up to the day Sheila is looking for the support of professional and amateur gardeners who would be willing to donate plants, ideally rare or unusual, to sell at the event. Pictures of donated plants and the names of supporting nurseries will be posted on http://www.facebook.com/stopwatchgardener

Why: The plant sale fundraiser is in aid of the Advocacy for Neuroacanthocytosis Patients, a registered charity which sponsors research into this ultra-rare neurological disorder. One of the UK’s only diagnosed patients is a family friend of the Averbuchs. Neuroacanthocytosis (NA) is one of Britain’s rarest rare diseases – only 10 diagnosed patients in the UK and 1,000 globally.

Further facts about NA: NA is actually a group of four rare neurological diseases which bear similarities to and may shed light on common neuro-degenerative diseases such as Alzheimer’s, Huntington’s and Parkinson’s. The NA diseases are characterised by movement disorders and strike young adults in their 20’s, leaving them dependent on others just when their independent lives should begin.
The research financed by the Advocacy focuses on the unusual characteristics of the diseases including brain cell biology that leads to cell death and is manifest in spiky red blood cells that may lead to an understanding of why brain cells self-destruct. Researchers in the UK and throughout Europe and North America are supported. The Advocacy for Neuroacanthocytosis Patients website (www.naadvocacy.org) includes a fuller description of NA disease group symptoms, a summary of the most recent research news and updates on NA patients in the UK and abroad.

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Flickr – Stopwatch Gardener. Photos are copyright Sheila Averbuch – media editors are welcome to contact me in reference to using the images. Thanks to Andrea Jones and Sue Bishop for being such great photography tutors!